Nora was born on 4/27/07 by emergency c-section. Due to intestinal malrotation with midgut volvulus 95% of Nora's small intestine had to be removed just hours after her birth leaving her with only 4.5cm of small intestine. This blog is dedicated to sharing Nora's journey with Short Bowel Syndrome.

Archive for July, 2008

The last two weeks have been full of good times. Nora got a swing set last week and has been loving her daily morning swings before it gets too hot outside.

Peek-a-boo!

And yes that is a fallen tree you see in the background. It fell a few months ago during a storm and we haven’t gotten a chainsaw yet to cut it up and haul it off. But it makes a nice bench for now.

We’ve been house sitting for a friend and Nora now has a new best buddy, Mr. Gray the cat. She looks forward to our daily visits to go feed him and gets quite excited that he lets her pet him while he’s eating. When we say his name she immediately starts meowing and heading towards the door. Here she is signing the word “eat” in case you weren’t sure what he was doing.

There have been a couple of little bumps in the road amidst all the fun but thankfully they have been minor. Nora’s liver enzymes (AST & ALT) were elevated quite a bit last week so she went back on Actigall. She had been on Actigall up until she went off TPN in April and it had always kept her liver enzymes under control so we are hoping to see an improvement in next weeks labs.

Nora had a rough week of teething last week so we all didn’t get much sleep since they bother her the most at night. But thankfully the high PH output that always seems to come along with her teething only lasted a few days, but it still caused her to lose a little bit of weight. It is so strong it burns her little tushy on contact. Nora has never been prone to diaper rash but even though we were changing her right away she got a bad diaper rash. As a result of it she learned a new word, “itch”.

On the subject of Nora’s output her poo has made a tremendous improvement over the last week. Her poops started thickening quite a bit last week and took on a very pungent odor even though we hadn’t made any significant changes in her diet. (Sorry to get poo graphic so if you don’t like reading about it I’d suggest to skip to the next paragraph.) They never smelled great to start with but oh my god, the thicker they got the stinkier they got! I have handled a many yucky poos since Nora has been born without batting an eye but this was almost too much for the “poop inspector” to handle as Montana has so lovingly nicknamed me. Since the consistency is so good we think that it’s just her system changing and developing along with a more varied diet but we did a stool culture just to make sure the new odor isn’t from overgrowth and should get the results early next week. In conclusion to the new poo story, we started giving Nora goat’s milk yogurt a few days ago and since then her poo went from great to beyond believable fantastic. I opened her diaper yesterday to find a well formed piece of poo! Not a blob of mush or a puddle of liquid but actual individual pieces of stool! I know I have said this before but never in my life did I ever think that #1) I would ever talk so much about poo and #2) would ever get so excited about it. It’s crazy how a such vile substance can make your day when you are a parent to a child with short bowel syndrome.

Now back to non-poo Nora stuff………

Nora has been on TPN for 12hrs during the night and off during the day for the past two weeks and has been doing great with it. She’s still a very good girl with her lines when she’s on but she certainly knows when it’s time to come off and is happy to have the day to run around line free. The coiled IV tubing came in and has made when she’s hooked up so much easier to handle, especially during the night. She hardly ever gets tangled in the line anymore. I would highly recommend it to anyone on IV’s.

Blowing bubbles with NeeNee is lots of fun!

So is playing with the maracas at Grammy and Pappy’s house!

Wow-wee I’m cute!

and oh-so sweet……….

We’ve added a few new videos of Nora if you would like to see little missy in action. They’re in the Nora Videos section from the Blog Categories menu.

Nora is doing great! We couldn’t be happier with the turnaround she’s made after going back on TPN 3 weeks ago. As much as we were hoping Nora could continue growing without TPN it is now very apparent that she needs it to continue to thrive. When she first went back on we thought that it may be more temporary than it now seems. At least she is doing so well on a very low dose of TPN. We are very encouraged for her future with her only needing a low dose for support instead of her body being completely dependent on it.

Since Nora bounced back so quickly she’s down to 18hrs on TPN from 24. She is still getting the same total volume just at a higher rate. She loves her freedom during the 6hrs off the IV line and her blood sugar has been stable during the break. So the plan is to go to 12hrs on and 12hrs off this week as long as her sugar stays stable and she gains weight.

Nora’s diet is still a constant challenge. It seems that as soon as we build up her variety than she stops tolerating foods that she had been doing very well with and we’re back to just a few foods that she can eat. Chicken broth and avocado had been a good source of protein and fat for her that she had done very well with for months but now she’s not tolerating either of them. New foods that we’ve tried that obviously didn’t agree with her right away include sweet potatoes, bananas and egg yolk (a daring one I know but we were trying to find a good source of protein). The newest foods that she seems to tolerate the best are red lentils (which make a complete protein when mixed with rice), green peas and carrots. Rice is still the backbone of her solids that we mix with each meal. We’re also trying a new formula, EO28 Splash by Neocate. It is very similar to Elecare but formulated more for toddlers than infants. It is a premixed liquid that has 30 calories per ounce. She can only tolerate a bottle or two of it a day but it is nice addition to her diet to get in more calories and give her more flavor variety. (Thanks for introducing us to it Cheri!)

Make sure there’s no more hiding under the plate!

Then brush-a-brush-a-brush-a!

Nora’s vocabulary is growing everyday. Some words are very clear and others require Nora translation from mommy or daddy but overall she is getting to be a very good communicator. She’s starting to say two word phrases like “uh-oh” and “all gone”. My favorite new word she says is “please” which sounds like “peas” but it’s very hard to resist what she’s asking for when she adds “peas” to the end. “Happy” is another new favorite word she’s saying. “Ouch” is one of her new words which makes me a bit sad to hear when we’re taking off tape dressings and such but it’s all part of it right? At least she’s usually tolerant of whatever it is we need to do after we explain why we have to do it. It’s crazy how much she seems to understand for an almost 15 month old.

Nora is very quick to learn new skills, show her something once and she’s pretty much got it. She loves to dance and make all of her baby dolls, stuffed animals, plastic toys (basically anything) to dance all the while shouting “dance, dance!” She loves to pretend to feed her babies bottles, she is very sweet at sharing pretend food and drink with us and her babies and loves to play doctor with her stethoscope. She’s very good at answering yes and no when we ask her questions, especially “no” when she doesn’t want something. She is polite about it but very sternly says “nu-uh” and waves her hands back and forth like an umpire. Nora is quite the silly girl and is getting sillier by the day. She has a very sweet nature and loves to show her affection with hugs and snuggles, unless she doesn’t know you…..then you get the serious eye.

What a difference a week makes! Nora has responded extremely well to being back on TPN, she is obviously feeling much better and like herself again. In just one week she has made a tremendous turn around with her weight and energy on only 10ml/hr (she was on 20ml/hr before weaning off TPN) and her labs this week showed a big improvement. For the first two days Nora was back on TPN she slept a LOT more than usual. We felt (as well has her doctor did) that her body was just finally catching up on much needed rest now that it wasn’t having to fight for nutrition. But we were starting to get quite concerned on the second evening when she fell asleep at 6pm after taking three naps during the day. We kept thinking isn’t TPN supposed to have the opposite effect? Thankfully she awoke bright eyed and bushy tailed last Wednesday morning and hasn’t slowed down since. She is certainly keeping us on our toes chasing after her with the portable IV pump and bag. She still has a while to go before she can carry the pump in her backpack so hopefully the coiled IV tubing will be in soon. Thanks to some other SBS parents we learned of an IV line extension which expands like a telephone cord. This should give her a lot more wiggle room from having to stay so close to the pump and allow for the line to give if it is pulled.

Nora has adjusted to being back on IV’s better than expected. With having two months of freedom under her belt from tape dressings and lines we weren’t sure what to expect. She has grown up so much in these past two months. She is no longer a baby but a little girl who makes her baby dolls dance, has meow talks with the kitty cats and has pretend tea parties. Besides protesting to being tied to the IV pole in the mornings while waiting for her Omegaven to finish she has been a very good girl about not messing with her lines and port.

Here are some long overdue pictures from the past few weeks.

Cousin Marin would be proud.

Nora loves her books.

She knows a good thing when she sees it!

Why did that cat run away? I only pulled his tail….

She’s ready for her piano lessons Pappy! (a.k.a. Grandaddy-o)

If some of you are wondering why Nora’s neck vein is so pronounced in the last picture, that is where her IV port catheter is implanted.